Triple Therapy

[TeeTom]

It has been a while since I last posted here.

I am on week four of the incivek 2250mg per day, peg 180u per week, and ribba 1200mg per day treatment. I am a lucky person that was able to get into a Vertex trial to test as this is my second round of tx.

The treatment has stipulations, the first one was I had to have IL28B geneotype of CC, I passed this test, the second is I have to have a viral load of 1000 or less at week four to stay in the trial, that day is this Wednesday. I believe I will be UND. The last one is at week 12 I will be randomized to go 24 weeks.

I have two questions..

One is there anyone out there that has been through the 12 week tx and declared SVR?
Two is there anyone out there that has been through this triple treatment for any amount of time that has relapsed?
Thanks ~T~

[TeeTom]

Just a  little update. I am in week six and the sx is still minimal. I was told that my Uric Acid levels are up to 12+ and I have noticed a little tinnitus in the ears.

Other than that today being day after shot I feel pretty good. I might even get out a little today and try to do a little physical work. I do still feel a little dizzy.

I am guessing that since I haven't heard from vertex I made the week four VL of less than a 1000 mark.

[TeeTom]

Thanks Laura, so far this round of tx has been fairly easy. My side effects have been minimal so far. The worst side effect for me is about 8 hours post shot time, I usually go into a daze for about 48 hours. The dreaded rash has been minimal so far, to be blunt I have had some anal issues but a little PreperationH took care of that.

I live by the gallon of water per day rule..

[Ironpony]

Sorry I did not answer your 2nd question. I just read (so it is hearsay) of someone relapsing after being und at 4 weeks and doing 24 weeks.
I don't know what allele he was.

do keep in mind though, that triple is not 100%. Studies very clear state that. a small percentage( less than 10%) will relapse or breakthrough or fail.
This poster just happened to be in this percentage.

It is also not known how compliant he was, there is no magic mirror to see how well someone followed the strict rules of Incivek.

Although its hard, I would not worry about who did what. Everyone is different and treatment effects everyone differently.

best wishes,
Laura

[Ironpony]

To answer your two questions...

I know of about 2 people who were declared SVR that finished triple tx early or by 12 weeks.

one woman could not go any longer due to side effects, and opted to stop at 9 or 10 weeks. I am not sure if she is cc, ct or tt allele, but she did reach SVR .

another was a cc who made it 12 weeks and had to stop because of rash.

There was also a gentleman who made it to week 9 with incivek and only 10 weeks with soc...he had a horrible rash and was hospitalized, pulled from tx. He is now post 3 months, still undetected. 6 month test pending.

I don't like to post this normally because I don't want treaters to get the wrong idea. Right now there are certain guidelines and timelines that NEED to be followed for a reason. These people HAD to stop for EXTREME reasons, and without data to back up shorter time, the fact that these people are either SVR or still UND should be considered very lucky if not a miracle.
(I have to put this out there because I would HATE if someone quit early because they think they have the same shot at SVR as if they did their full time, without data this currently is not true!)

in your case, being in trial that only runs 12 weeks for cc's it is not like you are quitting earlier against protocol...and I do personally think that they will have some good results with this study. I hope you are one of them!

Best wishes,
Laura :)  

Good luck and keep us posted! Your part in this trial could help a lof of people, thank you!

[TeeTom]

Pooh, Yes I am very lucky. I have a research Nurse and Dr. that stepped way out in order to get me in this trial. I am very Thankful that I have them on my side.

Vertex has blinded my viral loads so I don't know where my VL is as of today. At any rate it took me 10 weeks to become UND with just Peg and Ribba on my last round. I can't remember if that classified me as an early responder or not.

This forum used to have a lot of people that helped newbies figure out what directions to take in treating. It appears it has lost a lot of the fire it used to have. I guess Medhelp is responsible for that.

[TeeTom]

Hey Dee, The trial is Vertex VX11-950-114. It basically is trying to solidify that a 12 week cycle of the triple will kill the dragon in any IL28B genoetype CC. The reason is this, The Family Medical Act says you can have 12 weeks of medical leave and your employer has to keep your job available, some even pay a percentage of your salary (mine does not).

Also, according to my Doctor there are some other therapies in testing now that does not include Interferon or incivek that are successful, he did not say what.
So. Vertex being a business to make money is scared they will be trumped and not be able to be profitable before their Ace (incivek) runs out. So they are trying to get as much as possible out in the marketplace.

[Dee1956]

Hello, there are many people on here who have treated for 24 weeks and were UND at the end of their treatment.  
There are also people reporting SVR at 6 months post tx.  All is good news so far.  I did read of one person who was a previous non responder who did not respond.  Are you on a trial to see if 12 weeks of all 3 will work?  Just curious which trial this is.
Thank you
Dee

[pooh55811]

You are lucky you are CC. CC is usually easier to treat, with better success rates.

I don't know about the 12 week treatment, if anyone has been through it and attained SVR.

Frijole is keeping statistics on many of us. If you go to her profile page you will see a bunch of white pages under the photo section. Click on those pages and take a look at the stats. You can see how we are all doing. I am not positive if any one has relapsed after completing triple med tx. I do know there have been a few viral breakthroughs, a few whose VL never dropped much, and  a few people who had to stop treatment due to side effects. Here is a link to frijole's profile.

http://www.medhelp.org/personal_pages/user/223152

Wishing you the best. Keep us informed. If you want frijole to put you and your stats on the spreadsheet, just send her your info:
Whether tx naive or treated before and if treated before, what hapened.
Starting VL
Biopsy results (grade and stage)
Genotype including all subtypes
Which meds you are on
Date started meds
Your viral loads as you get them